March 30, 2013

HEATHER JOSE is passionate about helping millions of Americans with crises like cancer—because she’s been through such a life-and-death struggle herself. Today, she is a nationally known writer, speaker and workshop leader focusing on three groups: cancer patients (helping them play an active role in their cancer treatment), medical professionals (helping them to engage with patients in new ways)—and caregivers (helping them to plan for their own well-being even as they aid others).

TODAY, Heather Jose talks with ReadTheSpirit Editor David Crumm in our weekly author interview about her new memoir, Every Day We Are Killing Cancer. At the end of today’s interview, you’ll find several ways you can connect with Heather’s ongoing work.

OUR INTERVIEW WITH HEATHER JOSE,
AUTHOR OF ‘EVERY DAY WE ARE KILLING CANCER’

DAVID: Your title, Every Day We Are Killing Cancer, is dramatic! Tell us how that defined your approach to recovery.

HEATHER: Those words really describe the mindset that empowered me throughout this long journey. I was able to take the driver’s seat in my own recovery—and those words also signaled to medical professionals and caregivers that this was our purpose. Some people have told me they are turned off by the word “killing.” Hey, I’m a peaceful person, too, but I think it’s OK to say we’re killing cancer cells. (laughs) After all, that’s what chemo and radiation are intended to do.

I still remember my doctor initially telling me to go home and get ready to “start killing cancer.” I took that instruction to heart and I didn’t want anyone around me to step back from the challenge we faced together.

DAVID: You actually printed these words on a sign, right?

HEATHER: Yes, I tell that story in my book. I made this little sign that said, Every Day We Are Killing Cancer, then my daughter Sydney who was very young at the time decorated it with some of her scribbles. I had the sign at home and I took it with me when I went back to the hospital for treatments. I wanted anyone stepping through my doorway to know—that’s our attitude here.

HEATHER JOSE: A NATIONWIDE MESSAGE

CLICK THE COVER to learn more about the book and order a copy, if you wish.

DAVID: Years later, you’ve now crisscrossed the country as a speaker and you also write about these issues in both weekly columns as well as your new book. At the core of your message, you’re still telling people: Attitude matters! You say that a person needs to take charge of his or her life. Why is that so important?

HEATHER: Number 1—no one is invested in you as much as you are yourself. Number 2—you have the ability to make the deepest impact in the most ways. Your doctor can help with medicine. Your husband can make a great meal for you. But, ultimately, you’re the one making most of the decisions throughout each day—so you have to be invested. You have to take charge.

DAVID: OK, that’s an inspiring idea. But you’ve also become a leading advocate for caregivers—the millions of Americans who care for others with conditions like cancer or the disabilities of old age or other health crises. So, how do you balance those two goals: Taking charge of your own care—and actively working with caregivers?

HEATHER: The goal is to identify what you’re good at—then, as the captain of your wellness team, focus on those areas in which you are talented and have energy. Once you understand what you can do, you can supplement that with caregivers who are strong in areas where you’re weak. This isn’t a cookie cutter approach for everyone. You have to start by weighing your strengths and your energy—then find caregivers to do the rest. Sometimes, you’ll be surprised by what caregivers can do, if you carefully organize your team.

HEATHER JOSE: IDEAS FOR ORGANIZING CAREGIVERS

DAVID: Your book explains how you did this. Then, your weekly WeAreCaregivers columns give lots of additional tips. But give our audience a couple of examples. Here’s the common situation: A major catastrophe strikes and friends will say, “If you need anything, just call me.” Or, they cook something and show up at the door with a dish in their hands. Neither of those responses is bad—but you say those are just first steps. What do you suggest, when people start offering to help?

HEATHER: First, I need to say: It’s natural that you get a lot of general offers from friends and family. That’s a good thing. People want to help—but, they don’t know what to do yet. That’s why you need to organize. As you’re putting together your caregiving team, it’s your responsibility to tell people what you really need.

One thing you need is accountability. In my case, I needed people in my life who would hold me to a certain standard, have expectations for me. We all get a little complacent and it can be easy to fall into the role of a victim. But with caregivers there to encourage you to participate in daily life and activities that are beneficial for killing cancer, you are much better off.

Here’s another example of how we organized caregivers: At one point in my treatment, we had a three-hour round trip each day for radiation. My husband was working. I didn’t have the energy to drive myself. So, our church let us pass around a sign-up sheet for a transportation schedule. We actually passed it through the pews, inviting people to sign up to make the drive with me. That was a big help and people were happy to do that.

Another example: People wanted to make food for us. But, in my case, my diet was carefully planned. Instead, people provided gift certificates for food. That allowed us to use those options when we really needed them. It gave us choices. We got some pizza coupons, which were wonderful. I couldn’t eat pizza, but my husband loves pizza and he got tired of my diet. So, sometimes, it was great to have an easy dinner with my food for me—and a takeout pizza for my husband. People usually wouldn’t think of this unless you talk it over with friends and family and suggest the idea.

DAVID: Through those years of recovery, you did an amazing job. And you share lots of ideas in your book and your weekly columns. However, you also point out that not all volunteers are up to the task, right?

HEATHER: Yes, you need to be honest with yourself about which caregivers are helping you—and which could be draining you. For example, some people just can’t avoid telling you lots of stories of other people who had cancer, including stories about people who died of cancer. Stories like that really dragged me down. That’s just one example, but it is true: Some people who might volunteer to help are more needy than you are. You can actually wind up draining yourself that way. So, I say: It may sound harsh, but you’ve got to be selfish enough to organize your circle of caregivers to welcome those people who actually will strengthen you.

HEATHER JOSE: CARING FOR THE CAREGIVERS

CLICK the logo to visit WeAreCaregivers.

DAVID: We should explain more about this term “caregivers.” National reports tell us that about one in three American households includes a caregiver. There are millions of men and women doing this work on a daily basis. From your perspective, can you explain the term?

HEATHER: A caregiver is anyone who is providing regular, necessary care for a person who is going through a disease or is challenged by a disability, so this ranges from aiding people with cancer to taking care of a disabled adult son or daughter. One thing we do know about caregivers: Their lives are busy! They’re juggling jobs and family duties and their caregiving tasks. These are normal people—people you meet everyday—who are doing an extraordinary amount of work to help others.

DAVID: One of your major campaigns right now is spreading the word coast to coast that caregivers need more help, right?

HEATHER: That’s right. And the first thing caregivers need is to take care of themselves as well as their loved ones. Here’s the challenge they face: Their time is at a premium. They need to consciously plan how they are going to take care of themselves. How are they going to eat well, exercise, pray or somehow quiet their minds? They can’t refresh themselves if they don’t consciously plan for this.

DAVID: You’ve got lots of suggestions about this. So do other writers who sometimes appear in the WeAreCaregivers website that you host. Dr. Benjamin Pratt wrote a whole book on it, Guide for Caregivers. But let’s give our audience, in this interview, an example: You advise people to keep a personalized list of quick refreshers. You actually tell them to organize the list by the minimum amount of time these activities require—5 minutes, 10 minutes, 15 minutes and so on.

HEATHER: Everyone is different. Everyone has a different list, but the idea is to keep adding to your list of things you’d love to do if you just had 5, 10, 15 or 30 minutes. That may sound unworkable. But stop and think about this. For me, if I have just 5 minutes, that’s enough time for me go outside and sit in the sun for those minutes. I love that. Or, I can take a walk through my garden and see if I can find any new blossoms. If I have 10 minutes, I can put together a fast, healthy lunch so I’m not grabbing something at a drive-through window. Those are on my list, but you’ll want to make your own list.

If you’ve got a list, then you’ve got a plan for how to use those brief breaks as they arise in your day. If you don’t think about using those short breaks, then you waste them. This idea is about finding activities that give you some joy and replenish your spirits—and making sure they can fit into your day.

HEATHER JOSE: TURNING SURVIVORS INTO THRIVERS

DAVID: You urge people to take a positive approach toward these challenges. In fact, you’re one of the key people trying to change our everyday language from “cancer survivor” to “cancer thriver.” Why are you campaigning for that change?

HEATHER: This is important because your mind can do amazing things. I’m not alone in saying this. Recently, Deepak Chopra was making this same point on one of the network talk shows. Simply changing the way we talk about things can make a big difference.

Here’s an example: I’ve heard people say, “Oh no! This new chemo drug is so painful and it makes me feel so horrible. I hate it.”

That’s a natural reaction, because some of those chemo treatments are horrible. But we could take a different approach and say: “OK, this new treatment may feel terrible, but this is a very powerful drug and it’s really going to kill some cancer cells! I’m ready!”

Those are two ways of responding to the situation. One drags you down; one keeps you in charge of your recovery. Becoming a cancer thriver depends on lots of those small choices we make everyday in our lives.

Another idea? Stop reading all of those labels that detail side effects. Sure, it’s good that we are informed about possible complications. You may want to have someone you trust read the side effects for you. But, here’s the problem: Just reading about them can manifest these problems. A label may say: Can cause cramps in hands. Then, one day, your hand aches and you start thinking: Oh no! I’ve got a side effect! I’m sure of it! Maybe you just strained your hand or you’ve got arthritis.

We become cancer thrivers through making a lot of small choices in our attitudes each day.

HEATHER JOSE: A COMPASSIONATE IDEA
(THAT CAN HELP CHURCHES GROW)

TRY ORGANIZING AN EVENT TO HELP CAREGIVERS: In this photo, sailors from the submarine USS Bremerton volunteered for a public-service day, performing maintenance on three dozen wheelchairs brought in for service by members of the community. Photo by US Navy Chief Electronics Technician John Westbay, released for public use.

DAVID: Faith played a big role in your recovery. You talk a lot about physical fitness, diet and medical options—but you also encourage people to explore spiritual resources, as well. I know that your own community church has been a big help in your recovery. What advice can you share for reaching out to congregations?

HEATHER: First, you need to share with people what’s going on so they can help you. If you want people to pray for you, share honestly and be specific. When I was in the midst of this, my husband and I would tell people about specific tests coming up or other steps in my treatment—so they could pray with us about these milestones.

From the moment I was first diagnosed, our Sunday School group became a core group in my recovery. Sometimes close friends would even come over to our home and pray with us before a particularly big test or treatment or procedure.

I talk a lot more about this in my book, in my columns and in talks I give to groups that are interested in hearing about the spiritual part of this.

DAVID: Unfortunately, studies show that most churches really aren’t well equipped to help people—even though congregational leaders may think they’re good at it.

HEATHER: There’s a lot to discuss about how congregations can respond. We can talk about programs. We can talk about how individuals respond to your condition.

For example, some church people respond by saying: “God’s will be done.” That’s something I come across a lot in Christian groups. And I understand the background of that kind of prayer, but it may not be helpful to people who have just received a diagnosis. That kind of response could signal to people: Just sit back and do nothing—and that’s not a helpful message. I’ve come to believe that we want to form a partnership with God: I’ll do my part as a cancer thriver; and God, I’m asking, will you do your part.

The Bible can help. I know that I loved hearing verses of the Bible that tell us things like: “Have the faith of a mustard seed …” or “Faith can move mountains.”

DAVID: This actually is a wonderful area for churches to explore, because it can lead to church growth—partly through the re-activation of members who have fallen away. We’ve seen this happen in congregations that take caregiving seriously. The problem is that most pastors and lay leaders have never stopped to think about how many caregivers are right there in the community—but have fallen away from active involvement.

HEATHER: You’re right. This is a really big issue that hasn’t been addressed in most churches. First, caregivers do tend to fall away on Sundays. They can’t find anyone to relieve them of their duties on Sundays, so they can’t come to church. Over time, we forget about them. We need to start honest conversations about how many people in our communities are caregivers. If you do that, you’ll be surprised! A simple idea like organizing some rotating respite care to help free caregivers on Sundays—that alone can grow your community. And, there’s so much more you can do. You need to start by asking the caregivers in your community what they actually need.

This is a big, untapped area for congregations. Sure, we all start by praying for people with illnesses or other problems in their lives—but too many people stop there. The result is that we’re abandoning a big portion of our community.

HEATHER JOSE: GET A FREE HEALING AGREEMENT

Click the image to visit the Healing Agreement page.

DAVID: In your book, you explain that you summarize your mindset in a one-page “Healing Agreement.” When you give talks and lead workshops, you give participants a copy of this agreement. And now, you’re giving it to people free online—to download and print out for themselves. Can you explain this idea?

HEATHER: Sure. The Healing Agreement came about because we realized that not everyone is an extrovert. Not everyone is ready to charge forward and clearly tell people what they intend to do. It’s tough talking with doctors and health-care providers for some of us.

The Healing Agreement opens up an ongoing conversation between health-care providers and patients—to communicate about what is helpful and what isn’t helpful. We want to empower patients to take a leading role in their own care. And, medical professionals also are better served if they know what’s going on with you as a patient. If you don’t make a commitment like this, there’s a temptation to become passive when you’re receiving treatments. Or you may just focus on the steps for the current medical procedure and never talk to your health-care providers about what you should be doing all the days you’re not in the health-care facility.

DAVID: Where do you see all of this going?

HEATHER: I’m not arguing that we need to spend a lot more money or suddenly find more time. I’m focused on using the tools we already have as individuals to make a better healing environment for everyone. Health care providers can work much more effectively if they train themselves in interacting better with patients. And, if you’re someone with an illness or disability, you need to realize that daily choices you make—often small choices—can have a big impact on the rest of your life.

LEARN MORE FROM HEATHER JOSE …

GET A COPY OF HER BOOK: Click on the book cover above to learn more about Every Day We Are Killing Cancer. The book page allows you to read the Preface by best-selling nutrition author David Grotto, you can see the book’s Table of Contents—and more. To help support Heather’s work, please consider buying a copy of the book.

ENJOY HER (FREE) WEEKLY COLUMNS FOR CAREGIVERS: Every week, Heather hosts the new www.WeAreCaregivers.com column—dedicated to freely sharing ideas to help caregivers improve their lives.

SCHEDULE A TALK OR WORKSHOP: Heather travels coast to coast, speaking to three kinds of groups: Medical professionals, people whose lives have been affected by cancer and caregivers. She has provided everything from keynote addresses at major conferences—to workshops and classes that count as continuing-education credits. (If you’re interested in scheduling an event, email us at ReadTheSpirit@gmail.com.)

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